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Thursday, January 31, 2013

Well, seems I hit a nerve with that last post. Sorry if I offended anyone, well, I'm sorry but I'm not. The brave anonymous person who posted a comment on my last post was right, everyone does have their cross to bear whether it's a laundry problem or a dying of cancer problem and everything in between. If there's one thing I've learned, it's to never underestimate the challenges God can give you.

I try really hard to deal with my challenges the best I can. I usually do a lot better at it than I have this past year. There are really no words to describe how overwhelming this year has been. If you spend any length of time in this house, it begins to show.

My parents have been here for a week and I said to them this morning, when I felt things getting a little crazy and out of control, "You better leave, our dysfunction is showing."

They have been helpful in many ways. It's just nice to have someone else around to help me with the little things I have been having a hard time getting on top of including laundry and Sam's math homework. I will miss the helping hands when they leave tomorrow.

So, this is my blog and I usually try to keep things positive around here but the truth is, sometimes, no matter how you cut it, it's hard and I get frustrated, and anxious and just can't keep up the happy facade I generally try to keep. If you don't like hearing about my bad days then move on to one of the other hundreds of million blogs where there is a topic much more interesting than a family falling apart. I don't think my frustrations are much different than for instance, a couple unable to have a baby who get jealous and yes, even resentful of couples who have kids coming out of their ears or any number of other situations.

I remember one time when I had moved into a new ward at church and I was nine months pregnant with Shelbie. Two girls sat beside me and said, "We already hate you."
I thought they were joking but came to find out they had been trying for a year to have a baby hadn't been blessed with one. Now I see them around town and they both have lots of kids! One has 6, very healthy children and I am so happy for her. Still, I wonder if she remembers what she said to me, I wonder if she knows that my dream of having a healthy baby never did come true. I wonder what she would think now.

We all get tired, we all get annoyed and life presses in upon us. I don't know about you but I am discovering that I am human and I am not perfect like I once hoped to be or was at least anxiously engaged in becoming. Now, I'm just hoping we make it through the day in one piece or at least one glued together, looking halfway normal piece.

Sunday, January 27, 2013

Sometimes, I'm quite content just living in my little messed up world, venturing only to the grocery store and any other necessary places. I had no idea, 15 some odd years ago that life with Shwachman Diamond Syndrome would get as hard as it has. Not just the progression of the disease but I was unprepared for the emotional, psychological things it does to you, to me as the caregiver.

I guess I thought it would be something like this; the doctor says, "Your kids have Shwachman Diamond" and I think wow, okay. I spend the next month or two absorbing the bad news but then life takes on this new sense of normal and I think, this isn't so bad, I can deal with this. The medications are organized and dispensed on time, we have the hand washing and germ-o-phobic protocol down and things are going well. They get sick, I fix them and we are fine.

Back then, when they were little, I always thought everything would just stay the same. Theoretically, I knew it was a progressing disease but that was something that happened to the 'other' kids, not mine and even still, I just always imagined that I would handle it like I always had.

It's nothing like that. I'm a little disappointed. In fact, this week I am a lot disappointed. Disappointed in the disease for being so mean and unpredictable, disappointed in the people who were suppose to stick around and help me; friends who got sick of me being busy taking care of sick kids and just kind of quit asking how things were, carried on with their own lives, their happy healthy kids, trips to fun places, days at home filled with mom things, husbands who work and take care of them, who shoulder the load and hugs are not in short supply. Disappointed in marriage, the whole 'for better or worse, sickness and health' clause, apparently, the fine print was just too fine. All around me, people have bailed out emotionally. Sure, I still get the friendly conversations with caring undertones but at the end of the day, it's just me and this really crazy world I find myself in and I watch from behind this wall, the normal lives of people carrying on and it feels so weird and lonely.

I had a friend call at the most inopportune time this week when I was having a really hard day and she said I didn't sound good. She asked me what was wrong and I said, "I'm tired."
"You always say your tired."
"Ya, because I am." I just knew it would be impossible to make my feelings very clear so I left it at that and got on to more important things like how much laundry she has to do.

I realized once again, that I do not fit neatly into this world and I'm kind of disappointed. I'm tired and I'm disappointed. Nothing is the way I thought it would be.

Saturday, January 12, 2013

I think this blog is starting to sound like one post after the other of me whining! It seems like all I do anymore is whine about one thing or another. I don't mean to, I really don't but it's kind of starting to sound like that. Oh well, why stop now?

Still waiting for the insurance company to give the okay to start intensive testing on Sam to figure out this knee issue. In the meantime, it has been one crazy kind of week.

Sam spent nearly all day at the hospital in a nearby town on Tuesday. On Wednesday, Shelbie did her time here in town for her monthly transfusion. It was long but went well, no reactions.

Thursday was spent trying to catch up on work I missed Tuesday and Wednesday.

Friday, not so good. Shelbie ended up in the ER because of extreme pain. Came home late Friday night.

Saturday, not so good. Shelbie woke up worse than Friday! Took her back to the ER for some help in getting on top of the pain. Why is when you go to the ER twice in less than 12 hours apart they think something magically changed with the insurance coverage, drug allergies and weight?

Really, do they really think I went home and changed my insurance, had a pill party with the neighbors drugs, developed some allergies and fed her the entire refrigerator so that she would gain a modest 20 or 30 pounds overnight? Then, I love it when the nurse takes all this time to write down the medical history, the very same history the nurse recorded the night before, only to have the doctor come in for another rendition of the same story! Can't they share notes, or maybe it's because the nurse writes on a paper towel and then probably blows her nose into it or wipes up the guy's vomit next door. I don't know what happens to those notes but they don't seem to be very accessible.

Then, I always chuckle when the ER doctor says, "Seems to me you shouldn't do these transfusions if you end up in the hospital every month!" He says it as if it is optional, like we just keep ramming her head into a brick wall for the fun of it and then wonder why it hurts.

Going to the ER always makes for a good time. It's even better when I text my Wasband to let him know we are going back to the hospital and he says, "I don't think you should have to take her back up, she is suppose to be better by now." Okay...well, I tried to reason with the meningitis earlier in the day, reminding it that it should have been gone long before now but it was being onery and refused to leave so, here we are, chasing it out with a little ER elixir.

Sheesh...it's going to be another all-nighter of trying to get my work done, that thing that allows me to buy Ramen noodles to feed the hungry kids. I am glad that Shelbie sleeping peacefully right now. She really needs a break from this pain. Poor girl!

Tuesday, January 8, 2013

In the world where we live, it just isn't simple...it's complicated! I had no idea what was in store for us today, no idea!

Took Sam back to the Ortho surgeon who called to say he wanted to see us again. I love our ortho doc! He is so smart and spends a ton of time with us, answers all sorts of questions and does his research. He had a feeling that he should have a musculoskeletal specialist look at the MRI and x rays. They spent an afternoon looking at each little slice of the MRI. What they had originally thought was an ACL shredded down to almost nothing is actually Sam's normal ACL size! Abnormally small! There are no apparent tears or remnants of shredding to be seen. They did however diagnose a piece of bone on his patella that had been sheared off that was missed the first time around and a large tear in the ligaments that run up the side of his knee. After being in a brace and crutches for a month, it seems that those two issues are healing okay on their own but there is still a chance he will need surgery to repair this damage.

So, it's really confusing but here is where the problem comes in. With a super tiny ACL, is it going to be able to support his growing body and knee? Was he born with this defect, is mitochondrial disease killing the ligament and it is dying and shrinking or, are they missing something and it really is shredded to nothing?

They are going to try to get the insurance company to approve more imaging so they can look closely at his 'healthy' knee and compare the ACL sizes. It really is serious, while his muscles are growing bigger and bigger, especially as he does his sports, his ligaments and tendons should be growing at the same rate, Sam's is not! What does this mean for his future activity level? Possibly no sports! There are so many concerns I have and the doctor too. At this point, they really have no idea how to approach this. He and the other specialist have never seen anything like this before so they are kind of feeling their way along and trying to come up with a plan. He wondered if maybe he needs to have the surgery anyways to increase the size of the ligament and make it a normal ACL.

At this point, Sam is not in pain so he is out of the brace, off the crutches and trying to strengthen his leg. It is so scrawny after a month of not using it and his other leg is so muscular. The doctor wants him exercising it several times a day in hopes of getting the same tone as his other leg in a week or two. By then, we will also know if his patella and other tear is going to heal on it's own or if they will need to do surgery for that part.

I feel very strongly that Sam's fall happened so that they could find this problem. I'm not sure exactly what it all means yet or what will still be discovered but I know it is no coincidence that he fell and that our path has crossed with two of the best doctors in the State. Without a doubt, this is a necessary trial but at the same time, I am tired of this! Tired of this disease. I am weary when I think of all the ways these stupid diseases are stealing away little bits of my kids. So discouraging at times.

It's just been such a bizarre week to begin with and now this. It's so weird how I'm feeling, anxious and frustrated but at the same time, this underlying feeling that it is all in preparation for something big coming. I have no idea what that could be but I am going to be interested to see how this story develops. Stay tuned....

Sunday, January 6, 2013

Just in the past day or so, I feel like I am ready to take on 2013 and all it has to offer. So, far, it has offered up a full plate.

I am still waiting on a surgery date for Sam! Who knew this could be so complicated and drawn out and Americans think you have to wait a long time in Canada for medical treatment! It's been 4 weeks since Sam's accident and still no news on when this is going to happen. I am getting a bit anxious with each passing day but I keep trying to remind myself that there must be a good reason for the delay. Whatever the reason, I have a feeling we will find something out this week.

Shelbie is having her transfusion this week. I have never been so excited for transfusion day as I have this one! She has been miserable! Just totally miserable for an entire month. It takes every ounce of energy to get through the day. I still find it hard to understand the whole Mitochondrial stuff.

Spencer is doing much better! He got sick on Christmas day and just barely turned a corner on Saturday. He was doing all sorts of weird stuff like feeling like he had a fever but his temperature was really low. After taking him to the doctors this week and getting antibiotics started, things are looking up.

We have been involved with my friend's funeral this week and the boys were asked to be pall bearers. We attended the viewing on Thursday night, even Spencer said he thought he would be okay to go since it was just for a few minutes. We were standing in line, waiting to see the family and Spencer said, "Would this be a bad time to pass out?"
He was white as a ghost as they say..."Ahhh...in a funeral home? Ya, bad timing." I tried to get him to sit down on the floor right where he was or even lean over to get some blood to his head but he wanted nothing of the sorts. He just stood there swaying while Sam and I grabbed hold of his arms. Thankfully, he did not pass out but he was not looking good. Dumb Mito!

All in all, I am feeling ready to see what this week has in store. Hoping that Shelbie gets some relief and Spencer stays on the mend and Sam gets a new knee! It could be a big week!

Tuesday, January 1, 2013

It's been weird the last couple of days without my friend Carma. I used to run over to her house several times a day, scramble her eggs for breakfast, grab a taco salad from Taco Time for her dinner and keep her stocked with evergreen Lifesavers.

Being a caregiver is hard when the person you have cared for is gone. All of sudden, you wander around trying to find your purpose in life again. Your job just vanishes without warning. The kids have been gone for the New Years celebration with their dad and without Carma to keep me company, it's been pretty quiet and lonely.

Her family is busy getting things ready for the funeral this week and I feel like I should be doing more but it's not like I have known her all 76 years of her life, just the past 8. The boys were asked to be Pall Bearers and that is really special. When they were asked, you could see this reverence and respect for Carma rest gently on their shoulders. It's quite an honor, she has several older grandkids and sons who could easily fill the roll and they have included the boys in it.

I still can't believe she's gone. I found myself this morning, making plans of things to do with Carma on this first day of a new year but there are no plans to be had. She's happy now, hopefully taking long walks on legs that finally work and a heart that beats steadily and with that cheerfulness I had come to love.

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"For a small moment have I forsaken thee, but with great mercies will I gather thee...I hid my face from thee for a moment, but with everlasting kindness will I have mercy on thee, saith the Lord thy Redeemer...For the mountains will depart and the hills shall be removed, but my kindness shall not depart from thee, neither shall the covenant of my peace be removed, saith the Lord that hath mercy on thee.

Oh thou afflicted, tossed with tempest, and not comforted! Behold, I will lay thy stones with fair colors, and lay thy foundations with sapphires. And I will make thy windows of agates and thy gates of carbuncles, and all thy borders of pleasant stones...great shall be the peace of thy children. Thou shalt be far from oppression for thou shalt not fear, and from terror for it shall not come near thee." 3 Nephi 22:7-14